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Last Edited: 10/7/2014

The Los Angeles and San Francisco Bay Area ALS Surveillance: Project Overview & Background


The California Department of Public Health is launching a metropolitan area-based Amyotrophic Lateral Sclerosis (ALS) surveillance project. ALS is commonly known as Lou Gehrig’s disease.CDPH is conducting this surveillance project with the following objectives:

  • To obtain reliable and timely information on the incidence and prevalence of ALS during a three-year time period in Los Angeles and San Francisco Bay Area Counties.
  • To better describe the demographic characteristics of ALS cases in the metro areas.
  • To assist the Agency for Toxic Substances and Disease Registry (ATSDR) in evaluating the completeness of the National ALS Registry.

Why should we conduct ALS surveillance?

Uncertainty about the incidence and prevalence of ALS and about the role of the environment in the etiology of ALS supports the need for a surveillance system for this disease.  This information will allow the public health community to:

  • better estimate incidence and prevalence
  • detect changes in disease prevalence
  • describe who develops the disease
  • investigate the health care needs of the population
  • detect changes in health care practice
  • assess the burden of the disease

Legislative Mandate

On October 10, 2008, President George W. Bush signed a bill, which became Public Law No: 110-373, to establish a national registry for ALS.  ATSDR has been given responsibility to develop this registry.

 

Los Angeles & San Francisco Bay Area Surveillance Project

ATSDR awarded a contract to McKing Consulting Corporation (McKing) to conduct an ALS surveillance project in metropolitan areas.  In Los Angeles and the San Francisco Bay Area, McKing is partnering with the California Department of Public Health (CDPH).  Every neurologist who has diagnosed or provided care to an ALS patient from January 1, 2009 to December 31, 2011 is being asked to report cases.

Public health surveillance is being conducted to obtain reliable and timely information on the incidence and prevalence of ALS, to better describe the demographic characteristics of ALS, and to evaluate the completeness of the National ALS Registry. 
 

Contact Information

To get more information, please contact the ALS Surveillance Specialist:

Susan Paulukonis, MA, MPH
California Department of Public Health
850 Marina Bay Parkway, Bldg. P, 3rd Fl.
Richmond, CA 94804
Phone: (510) 620-3667
Fax: (510) 412-1660
Email

 

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